Newbie

tooalone

Hi everyone! I am so happy to have found you after years of going through this alone. I haven't found my symptoms any where, the neurologist after a year said " I don't know why it happened, but it could happen to your other leg too", rather cruel of her I think. I have had every test, EMG, catscan, MRI, dye shot into my spine, xrays, etc while I was in solid pain for a year. It, I believe was my sciatica down my left leg. I never had any pain in my back ever. There was no trauma, stroke, disease, etc. I literally was sleeping one night but woke up to a terrible pain in my ankle. It woke me up! In the days ahead my entire leg including butt was in terrible pain. I went to the ER. Nothing. I went to my doctor who sent me to a neurologist for an EMG. That took 3 months to just get that appt. while being in horrible pain every hour of every day and night. I went to PT, I had stims, I had stretches, I did everything and nothing stopped the pain. But I could still walk fine. I also saw a neurosurgeon who said after tests that there was nothing in my spine to operate on, it was fine. My regular doctor every once in awhile would ask me if I had foot drop. No, didn't even know what he was talking about......until many months later my foot started becoming "not my foot" any more. It got to the point I couldn't even move my toes, my ankle/foot was totally paralyzed. I was shocked and still in pain. I got a brace which helped some but it was awkward yet useful. After about a year, the pain started to subside in different parts of my leg and butt cheek. I am guessing that it was about 18 months before I had no pain, but was left with a paralyzed ankle and foot.

My life I knew, I no longer have. I can't walk safely except on an even flat surface. No more walks in the woods, no more walks with the dog, except on pavement, etc. Then came my toes......they started to work again, I got excited, I thought I would get all better....fast forward many more months and found that while sleeping or not standing on my foot, my toes would spring up in the air, only the pressure of standing or walking puts them back down. Now, I believe I have contracture.....when will this end? What the heck happened that night? What can be done?

Sorry..lol.....for the very long hello everyone!!!

Monica.T

Hi tooalone , The unknows are scary, not having any answers surly does make you feel completely alone. Keep searching for answers, and as hard as it seems, keep pushing forward. Being here you will find compassionate people and emotional support, as well as a lot of very useful information for helping you get through daily life.

I'm fairly new here myself, 20 months ago my son had a SCI, this community has helped us so much! Having others to talk to shows us that we are not facing the 'un-knowns' alone.

ambercollie

@tooalone I'm glad you found this site and hope we can help in anyway possible. Your initial reason seems to still be a mystery. As much as you want to know what happened  and I would too! Consider letting that part go and keep focused using energy on what's happening now. Sounds like there has been many ups and downs. 2 things stuck out when reading your post. You said you no longer take walks with dog. Have you tried using some type of crutches or wheelchair just for walks to get you outside and still doing the things you love. My son is a quadriplegic, likes to take his service dog out. 
Also they do have special foot boots you wear at night to prevent foot drop. 
Dont give up! You sound like a very strong person. Again Thank You for sharing.